Seeking Advice Regarding Pulsatile Tinnitus

[Ross McLauchlan]

Hey,

Wishing you all the very best for the coming year and hoping that the research world will give us some good news regarding treatments in 2020.

I have a question regarding pulsatile tinnitus that I'm hoping some folk may be able to provide some advice on.

I have regular ringing tinnitus/hissing which is bi-lateral and in my head. My pulsatile tinnitus appeared on the same day as my regular tinnitus (around three years ago) and has generally stayed located to the right side of my head - which is where my tinnitus started initially, in my right ear only. It has the classic pulsatile characteristics: a whooshing, vascular sound (almost like turbulent, rushing blood) that is in concert with my heartbeat.

While I hate the pulsatile tinnitus, it is not always present - it comes and goes throughout the day and is often at its peak when I return home from work. Interestingly, for some reason noise exposure will spike it to intolerable levels for quite a number of weeks; which does seem at odds with the nature of pulsatile tinnitus. When the pulsatile tinnitus is at its worst, I can clasp my hands around the back of my head and squeeze the boney part of my skull which will stop the pulsatile tinnitus immediately. It resumes with more ferocity when I let my hands go, as if all the blood/pressure has been building and is now whoosing free.

I'm based in the UK and, while sympathetic, I haven't had a great time with GPs regarding this issue - no recommendations for scans, no advice at all really. Hence why I'm gathering some info to perhaps get this looked at more seriously in the coming weeks. I almost feel is if there are a cluster of veins at the back of my head which are letting the blood squelch through.

Has anyone been in a similar situation and if so, did you get scans, etc? I'd rather not get an MRI, purely based on the volume of the machines, which I'm fairly sure will give me a spike in my regular tinnitus. I'm wondering if I should I see a new GP?

Thanks for any suggestions.

 

[tiniturtle]

Hey,

Wishing you all the very best for the coming year and hoping that the research world will give us some good news regarding treatments in 2020.

I have a question regarding pulsatile tinnitus that I'm hoping some folk may be able to provide some advice on.

I have regular ringing tinnitus/hissing which is bi-lateral and in my head. My pulsatile tinnitus appeared on the same day as my regular tinnitus (around three years ago) and has generally stayed located to the right side of my head - which is where my tinnitus started initially, in my right ear only. It has the classic pulsatile characteristics: a whooshing, vascular sound (almost like turbulent, rushing blood) that is in concert with my heartbeat.

While I hate the pulsatile tinnitus, it is not always present - it comes and goes throughout the day and is often at its peak when I return home from work. Interestingly, for some reason noise exposure will spike it to intolerable levels for quite a number of weeks; which does seem at odds with the nature of pulsatile tinnitus. When the pulsatile tinnitus is at its worst, I can clasp my hands around the back of my head and squeeze the boney part of my skull which will stop the pulsatile tinnitus immediately. It resumes with more ferocity when I let my hands go, as if all the blood/pressure has been building and is now whoosing free.

I'm based in the UK and, while sympathetic, I haven't had a great time with GPs regarding this issue - no recommendations for scans, no advice at all really. Hence why I'm gathering some info to perhaps get this looked at more seriously in the coming weeks. I almost feel is if there are a cluster of veins at the back of my head which are letting the blood squelch through.

Has anyone been in a similar situation and if so, did you get scans, etc? I'd rather not get an MRI, purely based on the volume of the machines, which I'm fairly sure will give me a spike in my regular tinnitus. I'm wondering if I should I see a new GP?

Thanks for any suggestions.

A GP cannot diagnose you or give you advice regarding this. Maybe you should get a new one though if they aren't taking your concerns seriously. My PT indicated a life threatening issue that needed surgery. And you're right, almost 100% of the time PT is caused by a vascular issue of some sort. Some can be serious, some can be benign, but you certainly shouldn't ignore your symptoms, and you should have it investigated. I'm going to attach two links, one is a post I created to help people in your situation, the second is written by the doctors at NYU that treated me, that link contains extremely valuable information regarding diagnosis and treatment of PT. Let me know if you have additional questions. I also want to add that tinnitus and pulsatile tinnitus are separate and not related in any way. Don't lump them together. That's probably part of the reason why your GP is dismissive. They probably think it's nothing. I really like my primary doctor, and she helped me to get diagnosed, but she even said she had never heard of a dural arteriovenous fistula, and it's not something should could have helped me figure out.

If You Have Pulsatile Tinnitus, Here's the First Thing You Need to Do to Get Answers and a Diagnosis

 

[tiniturtle]

Also, you're probably going to need an MRI and MRA at a minimum. If something is found, then a cerebral angiogram to confirm.

This:

. I almost feel is if there are a cluster of veins at the back of my head which are letting the blood squelch through.

Sounds exactly like a dural arteriovenous fistula. I don't want to worry you or make you anxious, just driving you to get it evaluated by a proper doctor. No one here can make any diagnosis for you. If it is a DAVF, these get worse over time and eventually become life threatening because the vein almost always ruptures at some point, leaving the patient with an intracranial hemorrhage. Summary, don't stress a ton about it, but do not wait to have it evaluated. Get to a specialist as soon as you can. This is something you should have figured out in the coming weeks, not months.

 

[Ross McLauchlan]

I really appreciate you taking the time to get back to me regarding this. Thank you for the links - I'm glad you were able to identify this issue and resolve it. Very commendable that you took the time to relay this to the community here.

Interesting that you recommend separating pulsatile tinnitus and regular tinnitus - I've always regarded them as linked due to the issues appearing simultaneously. Do you have regular tinnitus and, if so, has this surgery had an impact on that?

Not to worry, I'm not overly concerned with my health or worried about anything life threatening, but I'll take your advice regarding the DAVF and try to communicate this better to a new GP.

If an MRA/MRI is required then I'd probably give this some serious consideration. Unfortunately I'm in a position where my tinnitus is fairly reactive to loud noises; however, if it would lead to quieter PT, then it's a risk I'd likely take.

Did your PT ever increase due to noise related spikes? I've noticed a correlation to noise induced spikes and a definite increase in my PT which can become very intrusive for a number of weeks.

Thank you again for your response.

 

[tiniturtle]

My tinnitus was caused by an antibiotic. That seems to have gotten better, but I don't expect it ever to go away. My PT came later, which was caused by a DAVF (I've had two so far, same symptoms both times, on different sides). My PT was fully and completely cured with surgery. More importantly, I would have been dead or disabled if the DAVF ruptured, which was the more important reason to have the surgery done. I have no permanent or lasting problems. The surgery is minimally invasive. After the PT was cured, I'm still left with tinnitus. They are not related in any way at all. I've had numerous MRIs over the past few years. It has never caused an issue with my tinnitus. They will give you headphones or earplugs. If you're concerned, ask for both. It's really not as loud as people make it out to be. I find the process relaxing, actually.

How you explain your PT, with how it changes, and how pressing on your head helps alleviate it, these are all classic symptoms of a vascular cause.

What is hopeful, is that both PT and DAVF are fully curable in the majority of cases. It is of utmost importance you choose a very good specialist to perform this procedure though. It's the difference between recovering in a few days or being left with a permanent disability or death. You have to be very particular. Don't trust just anyone.

If your PT goes away, that is usually not a good thing. That happened in my case, and I can't remember if I mentioned it that post, but that's when it became life threatening and my surgeon scheduled me for urgent surgery. When my PT went silent, that's because that major vein shut down and was pushing the blood flow back into my brain. I couldn't hear it anymore because it took a different route. Don't gamble with your life.

I'm actually going back in less than a week for my 6 month follow up cerebral angiogram. I'm hoping I'll be in the clear.

 

[Ross McLauchlan]

That's great to hear that you're in the clear - good luck with your follow up, I hope that things remain well for you.

My PT has felt vascular for a very long time and the fact it disappears when I compress the veins in the back of my head has always lead me to believe this. It can disappear to silent levels for weeks on end, but it has never gone away. For the past two weeks it has been very loud, only to get quiet in the last two days. I will take your advice though and get it checked despite the period of calm.

Out of curiosity, why are you still on this forum? Is tinnitus still an issue for you generally, or are you simply trying to help folk like myself who may be in a similar position? In any case, thank you for your time, it is greatly appreciated.

 

[tiniturtle]

My tinnitus bothers me very little at this point. I'd still prefer not to have it, but I've learned to live with it. I mostly come on here to help people with PT get a diagnosis. Even here, this is a lot of misinformation, and having it paired with general tinnitus, etc. Unlike general tinnitus, it is curable most of the time, and it often can indicate something dangerous as well.

 

[Ross McLauchlan]

I'm glad your tinnitus isn't as troublesome these days; however, I completely understand that you'd still like to be rid of it.

I'm sure many people here will thank you for taking the time to respond and providing some much needed info regarding PT. Using your suggestions, I'm hoping someone will listen to me and I can get rid of it!

Thanks again,

Ross.

 

[Blondechick]

Hi Ross

I'm also based in the UK. I developed pulsatile tinnitus a few months ago, following some distortion in my hearing/sensations in my left ear after flying. I went to my GP after my ear had felt "weird" for a few weeks - it felt like it had not "popped" after flying and everything sounded muffled on that side. At that point the pulsatile thing hadn't started, so my GP tried to fob me off by suggesting an infection, for which she could give me antibiotics, or water behind my eardrum, for which I could take a nasal/decongestant spray etc. I rejected both of these options and chose the third option, namely to see an ENT doctor. Somewhere in the intervening period (weeks) before seeing the ENT doctor, the pulsatile thing started. I was offered a hearing test at the hospital (very bad on my left side) and the ENT doctor offered an MRI scan, as there is a v.small risk that this was all caused by a tumour. As I think is clear from a lot of the forums/reading I've done, MRI scans rarely seem to show anything useful to tinnitus sufferers, and you have to ask your doctor for another diagnostic test. She agreed to give me an ultrasound (Doppler) on the blood vessels in my neck, because if I press in certain spots on my neck the pulsatile tinnitus seems to subside temporarily (rather like your actions pressing the back of your head) but both this and the MRI showed nothing untoward. At this point she has given up, and referred me to the audiology clinic for a hearing aid (!) and the "tinnitus clinic" which seems to be some kind of support group. Clearly neither of these options are treatment-orientated but I will see what they offer before summoning the energy to try another doctor/go private/do something else.

So please start with your GP, as tiniturtle says they are not going to be able to solve it but are unfortunately the starting point for most things in the UK!